'I'm not a hypochondriac. I have a disease. All these things that are wrong with me are real, they are endometriosis'

'I'm not a hypochondriac. I have a disease. All these things that are wrong with me are real, they are endometriosis'

I feel sad that this is the hardest story I’ve ever written and that I’m embarrassed that people will read it and know the intimate details of my life. But I’m also hopeful that a conversation has begun

Gabrielle Jackson: ‘I didn’t want to think of myself as somebody with a disease.’
Photograph: Mike Bowers for the Guardian

I have a disease that I know nothing about.

I thought I knew everything, or at least a lot about it – but that turned out to be very far from the truth and also very bad for my health.

I have endometriosis. For a long time I thought it was all about the debilitating period pain I’d had from the time I was about 14. Cramping I’d heard of and could identify in my belly, but it was harder to describe the ache in my back and how my legs felt under such constant pressure that it was hard for me to stand upright. I also felt sick and couldn’t understand why having my period should make me get diarrhoea and need to pee constantly. At 17 I was put on the contraceptive pill by a doctor and led to believe that was all medicine could do for my troubles. At university, it was easier to miss classes.

In 2001, at 24, and after eight years of complaining to several different primary care doctors of period pain that didn’t “feel normal”, I insisted on a referral to a gynaecologist. My general practitioner, who memorably told me that “some women have bad period pain, that’s life”, reluctantly gave me one.

Luckily for me, the referral was to a specialist who had good knowledge of endometriosis and experience in laparoscopic surgery. He immediately suspected endo and performed a laparoscopy, which turned into a laparotomy (where a surgical incision into the abdominal cavity is made) after a marathon surgery to remove lesions and adhesions that had fused my uterus, bowel and rectum together.

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He was quite keen on showing me photographs of his handiwork.

“Look how bad it was,” he said as he pointed to bloody pictures that all looked the same. It didn’t matter to me which one was the bowel and which was the rectum, I just needed to hear his words “look how bad it was” because it made me feel vindicated. I had almost begun to believe that I just had a low pain threshold and couldn’t handle what normal women could. Now I had a disease with a name and I didn’t have to feel like I was making it up any more.

I found some online support groups for women with endometriosis. The internet was pretty scary back in 2001 but these women’s stories were terrifying. I decided I didn’t need a support group; I didn’t want to think of myself as somebody with a disease. Besides, my doctor was so confident.

I just needed to hear his words 'look how bad it was' because it made me feel vindicated

“Come back and see me when you want to get pregnant,” he said and I left that room believing I was close to cured. He probably didn’t expect me to wait 14 years before seeing him again but I wouldn’t have minded a heads-up that the symptoms of endometriosis are not necessarily limited to period pain. To be fair, my endo pain was a lot better for a long time.

But I had other problems, which got worse over time. I had consistent digestive problems, which I’d complained about to doctors in Australia, and in the UK and US when I was living there. Once I was told I “probably” had a kidney infection. When I was in New York a doctor tested me for numerous sexually transmitted infections, as well as HIV, hepatitis A, B and C and pregnancy, without telling me and in spite of me insisting none of these could be the cause of my illness. Another doctor told me I had a parasite in my gut. A naturopath concurred.

I often used my legendary (but uncomfortable) bloating as a party trick, showing friends how I could appear eight months pregnant in a matter of minutes, but it never occurred to me to that it was linked to endo. Doesn’t everybody go up a dress size the week before their period?

My back pain I put down to a compound fracture of the sacrum I’d suffered while skiing when I was 19. The intense stabbing pain, dull ache and occasional throbbing of the muscles around the pelvis all made sense in relation to that accident when I explained my symptoms to the numerous physiotherapists I have seen for 18 years. I ascribed my rectal pain to this injury too, but never spoke much about that to anyone. I thought it was normal.

I came to see my intermittent fatigue and lethargy as a sign that I was a weak person. What other reason could there be for all my health problems? I never grew out of cold sores as the rest of my family did. If anything, they got worse as I got older. Almost every time I got my period, a cold sore would come along to greet it. They were painful, unsightly (often growing from my nose to my lip) and too regular. Doctors and naturopaths told me my immune system wasn’t working properly but they never told me that endometriosis affects the immune system. I just thought it was because I was so very tired.

I came to see my intermittent fatigue and lethargy as a sign that I was a weak person

Pain during sex was never a major issue for me, but I often felt nauseous afterwards. I never told a boyfriend. How could I say, “You make me sick. Literally”? One boyfriend physically recoiled at the mere mention of the word “period”.

Eventually the pill could no longer contain my symptoms and they began to overwhelm me again. One day I was standing by the pool watching my nephew’s swimming lesson and all of a sudden I had such severe stabbing pains and cramps in my abdomen that I involuntarily doubled over. I managed to make it on two feet, huddled and hobbling, to the bathroom before diarrhoea started. When that was over, the vomiting began. I was in so much pain I could barely walk to the car. No amount of painkillers or heat packs could make me feel better.

That’s just how my life was from then on. I never knew on which day of my cycle this pain and nausea would begin or end. The back pain became especially severe after menstruation and my pelvic stiffness got worse. After sitting at my desk for an hour or so, I could only get out of my chair like an 80-year-old. Hip pain became a new feature of my life.

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I found an excellent GP in Sydney after returning from London in 2013 who recommended I see a specialist to treat my endometriosis. But I’d had shoulder surgery in 2012 after a train accident in India (disclaimer: being clumsy is not a symptom of endometriosis) and I didn’t want to be in hospital again.

When I spent the last Christmas holidays in bed with pain, fatigue and nausea, I knew I had to do something. But I’d just started a new job, so I wanted to delay surgery if I could. I heard about a campaign to make a drug called Visanne – which had been successful in treating women with endo in other parts of the world – available in Australia. I wanted to try it.

I tracked down the two women who started the campaign – Lesley Seebold Freedman and her daughter Syl Freedman – and did a story on them for the Guardian. They told me about a conference they were holding – the first conference that would include specialists and patients at the same event – and so I went off to cover it, thinking I’d write a quick news story afterwards.

I didn’t write the news story because I couldn’t stop crying.

I wasn’t trying to be a martyr ... it’s just that it felt like a personal defeat to let the pain get the better of me

I cried the entire bus ride home, then cried on the phone to my mother, my sister, my friends. I had to tell them all: “I’M NOT A HYPOCHONDRIAC! I HAVE A DISEASE! ALL THESE THINGS THAT ARE WRONG WITH ME ARE REAL. THEY ARE ENDOMETRIOSIS!”

I cried for all the colleagues I’d lied to about why I wasn’t coming to work. I cried for the all the energy I’d put in to smiling when I wanted to cry. For sitting at my desk in agony, holding my breath, waiting for the cramps to pass, using every ounce of energy I had to just look normal rather than appear weak by having to leave. Sometimes I’d disappear into toilets. When I had to go home because of the nausea, I lied about the reason. It was always so much easier to blame an “upset tummy” than my endometriosis.

I wasn’t trying to be a martyr by going to work in pain, it’s just that it felt like a personal defeat to let the pain get the better of me. When it did, it was just another sign of my weakness, of how I couldn’t cope with life. I didn’t want to be weak, and so the fight to carry on regardless was never about looking good or appearing hard working; it was a personal battle, a test to prove I was strong, to show myself that I could muster the energy to do all the things that other people could.

I cried for the social events I’d cancelled, the friends I’d let down, for dragging myself to parties and then feeling guilty for leaving early.

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I cried for Syl and Lesley – two women who decided they’d had enough of the lack of knowledge about endometriosis and took it into their own hands to do something about it. Those two bright, strong, funny women changed my life. And now that they’ve started the awareness raising charity, EndoActive, they’re continuing to change women’s lives in Australia every day.

Three particular speakers on the day of the conference changed the way I saw myself. Susan Evans’ presentation on chronic pelvic pain made me understand my back, hip and leg pain in a totally different light.

Alison Hey-Cunningham’s explanation of how endo affects the immune system was both enlightening and frightening. One slide where she showed the link between endometriosis and other conditions was particularly startling. Women who have endometriosis are 180 times more likely to have chronic fatigue syndrome than the general female population, twice as likely to have fibromyalgia, 20 times more likely to have sinus or perennial allergic rhinitis … the list goes on.

Geoffrey Reid’s discussion of fertility and endometriosis broke my heart. He spoke about his endo patients as humans. As women – yes – but also adults with feelings, full lives and myriad goals and considerations.

If you think that’s a strange statement, then you haven’t presented to a doctor with symptoms of endometriosis. Support groups worldwide are linked by a common theme: too many women being dismissed by their doctors for years as anxious, “type A” personalities, hypochondriacs or merely difficult. It’s the 21st century’s “hysterical”.

I even read in South African Grazia a doctor mulling over how this disease can be fixed with stress management because it is really only type A personalities who have endo! Of course – only hysterical, difficult, complaining women get this insidious, vicious disease. How silly for us to think it might be the disease itself which makes us complain.

I’m not a type A personality but after the conference I realised I needed proper medical help, so finally I went to a specialist I’d identified through the conference.

The news I was to receive, after such a long delay in getting the help I needed, was confronting and emotional.

I now have endometriomas (cysts) in both ovaries. My right ovary is stuck to my uterus, which is stuck to my bowel. In the coming months I need to have surgery to remove the endometriosis as well as a section of my bowel. The surgery on my ovaries will probably make me infertile.

Now I have to consider, what if some doctor a long time ago had linked my symptoms? What if I’d kept up to date with research and knowledge and known more before now? Could I have stopped it getting this bad?

I go to every appointment ... with a list of questions. This time, I’m going to know everything

My discussions with my current specialist are light years ahead of any I’ve had with any health practitioner before. He gives me information, asks questions, lets me make my own treatment decisions.

I am 38 years old and he suggested I consider freezing my eggs before surgery. After a different doctor told me that my only treatment option was a hysterectomy, I knew this decision was a no brainer: I wasn’t ready to give up the idea of having children.

This didn’t feel like a special privilege until I told a friend with endo who, despite having undergone five surgeries at the hands of three specialists, was not given any options for preserving her fertility until it was too late. Countless other women have gone into surgery without their doctors discussing their fertility with them.

I’m in the process of freezing my eggs now and I write this under the emotional cloud of daily hormone injections. I go to every appointment with my gynaecologist and colorectal surgeon with a list of questions. This time, I’m going to know everything.

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I now know that far, far too little is known about endometriosis. But what I do also know is: it exists in women with and without children. It exists in young girls and old women, women with careers and women who have stayed at home. In all countries, at all socioeconomic levels.

I am sorry that I haven’t spoken about my disease more. I feel ashamed that I haven’t learnt more about it. I feel frustrated that invasive surgery is the only diagnostic test and that therefore so many women go undiagnosed. I feel angry that so many women still receive bad advice and ineffective treatment. I feel sad that this is the hardest story I’ve ever written and that I’m embarrassed that people will read it and know these intimate details of my life.

Mostly, I am filled with rage that a disease that affects 176 million women is one most people have never heard of. But I’m also hopeful that a conversation has begun.

Gabrielle Jackson is the deputy opinion editor for Guardian Australia.